Three Little Engines: Hard at work

Friday, January 30, 2009

Hard at work

It took me all afternoon to make these three batches of cereal bars. From left to right: Aidan's favorite made with the corn syrup, butter, brown sugar base... along with multi grain Cheerios, Kix, Life, ground flax seed, and wheat germ, with chocolate chips on top. Mommy's favorite made with less sticky base and what I'm sure the boys would refer to as bird seed. Jacen's favorite with more of the marshmallow base and no bird seed, but still the other good for you stuff. It's much easier to make Aidan's version. The marshmallow base is so hard to stir in the cereal! My arm is sore.

While I was doing that, Aidan was interrupting me every 10 mins. "Diaper change," and "drink, please," and "chocolate, please," and "take it!" (Referring to the wrapper.) Then when I got the camera out, he insisted, "picture with Harold!"

And Jacen was busy playing. Marble (more like ball, they are so big) fun, stacking, climbing, gibberish talking. Did I say climbing? :)

1 comment:

Erin said...: We have lots of cereal too... I'm going to have to try out some of your cereal bar recipes. AND cool marble toy.; January 31, 2009 at 3:15 PM

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Okay, here's the thing:

For those who don't know already...

My oldest, Aidan, was diagnosed with a severe form of Epilepsy called Lennox-Gastaut Syndrome that is not treatable by the time he was 5yrs old. Then Jacen, with mild Cerebral Palsy w/seizure disorder, and Damon with Epilepsy. Later, after extensive testing, specialists said we are dealing with an untreatable neuro-degenerative genetic disorder that all three boys have. Genome sequencing results are still pending for mitochondrial forms that all testing and history points directly to. Heartbreakingly, Aidan passed away September 14, 2014.

All 3 have had varying degrees of developmental delays and regressions, but the same symptoms and in the same cycle. They are just at different stages of the disorder. The genome testing will hopefully provide an answer to the specific genetic markers causing all this so we can maybe, just maybe, make them a little more comfortable as they pass away. Jacen and Damon have now been diagnosed with LGS as well. And Jace is on Hospice. This is my journal.